tv Beyond the Headlines KOFY November 15, 2014 7:00pm-7:31pm PST
♪ welcome to beyond the headlines. i am cheryl jennings. we are talking about food allergies and other disorders like celiac. it is a serious medical condition effecting up to 15 million in the united states, including 1 in 13 children, according to stanford alliance for food allergy research. allergies range from mild to life threatening. our first guest was featured in a discovery channel special, an emerging epidemic, food allergies in america. >> charlotte has always been my absolute good luck charm. she's exuberant, full of life,
incredibly bright, and charlotte loves to sing and dance. >> would probably be broadway jazz, just really active, you get to move around a lot more, and also are a lot looser than other classes. i enjoy that. >> miray and her daughter charlotte have a lot in common. charlotte is allergic to peanuts and tree nuts, and her mom to seafood. that doesn't slow them down. they share the struggle. pull together, and help each other out. >> joining us in the studio, she and her daughter. as ceo and founder of bay area allergy advisory board in charlotte, team ambassador for the board. i want to start with this. why did you create the board in 2007. >> i began it in 2007, and the inspiration was actually halloween. after a particularly fun
halloween party, i was able to keep charlotte safe and watch her enjoy a magical evening, i started to think of other families, figured we could stick together, find other ways and solutions to keep the kids having fun but staying safe. >> great idea. it serves everybody in the bay area? >> it serves the entire bay area. no one is turned away, all income levels. find us, we take them in, do our best to solve their issues. >> i know it is big for you, charlotte. tree nuts and peanuts. wow. take me back to when you first learned about this. how old were you? >> i was three years old when one of my friends brought over a peanut butter and jelly sandwich, and my mother knew we were testing foods early on, got to m and ms, she thought the allergy originally was chocolate. when we got that peanut butter and jelly sandwich, she thought maybe it was the chocolate, wouldn't be a big deal. once i took a bite out of the
sandwich and hung out and then he left, i literally, it hit me. i started swelling up, my throat started swelling, and that's about as much as i remember. then i remember coming home. >> and you went in the hospital. >> yes. >> what a scary time for you both. you figured it out eventually. >> yes. >> what does the board offer for families who are in your situation? what do you do for them? >> we provide advocacy, education. we supply them with the resources to talk to people that can help them, for example, we have a licensed psychiatrist on the board of directors, so people can relax a little more and just have someone to talk to, to share their inner feelings about the food allergies. we're able to help families get in touch with allergists and in some instances help provide financial support for families who need the medication. >> i see you brought the epi pen. i want to talk about that in a moment. so the symptoms, the most common
symptoms are? >> well, they range, so food allergy is when your body rejects and attacks actually a food protein, and once you ingest the food, triggers a violent reaction where your body releases histamines. symptoms can be mild, itching, localized hives, or can be very serious, wheezing, difficulty breathing, loss of consciousness, in some cases sudden drop in blood pressure. it is important for people to understand food allergy can be fatal. >> you have to call 911 right away. >> exactly. >> talk about the epi pen in a moment. we have to take a quick break. they'll stay with us another segment, talking food
13-year-old natalie georgy was with her family in the national forest when she had a severe allergic reaction to peanuts. the carmichael girl mistakenly took a bite of a rice crispy par with peanut butter. they used epi pens. that's a sad story, so sorry for that family. they're trying to help educate people. you brought one of these pens. most of us call it the epi pen. charlotte, how do you use this? what's the trick? >> these are the training pens, don't have the needle or medication inside. normally, would you like to take one? normally what you would do, you take out this blue pen and then once the pin is taken out, inject into the meat or leg of the thigh, wait four or five
seconds. >> front of the thigh. >> you wait for a clicking sound. count one, two, three, four, five. then take it out. the pen should have already come out by now. >> what are the side effects. >> heart rate, feeling of anxiety, shortness of breath. always best when you have to use the auto injector to call 911. usually they take the pen with them as they take to you the hospital, monitor symptoms. symptoms don't do last long, it is like a hit of adrenaline how quick it washes over us, passes and fades. the risk of using the pen is incredibly low. danger of waiting is incredibly high. always best to use the pen, call 911 and deal with speedy heart rate for awhile. >> charlotte because you're young, in school, kids find out you can't eat certain foods, is there a stigma and how do you deal with that.
>> usually with my friends we will stay on campus or they may go down to the beanery where they get their food if they have food plans and buy the food. i will usually not eat there because i don't know what they're serving. if it is just the weekend, we're hanging outgoing downtown, i tell them the kinds of foods that i know at the restaurants you might want to go to that it will have cross contamination, be made in the same facility. they're usually pretty okay with that. they usually take it well and look after me. >> was there ever a time kids harassed you? >> not for a very long time. >> only once. >> that's good to know. there's a risk of cross contamination, right? >> uh-huh. >> has the treatment for allergies changed since you were a kid? >> it is a vastly different game now, enlightening and inspiring to see the strides that have been made. there are all sorts of clinical trials currently under way that
including oit, where people eat small amounts of food under careful medical attention. the awareness piece blossomed in a way that inspires me each and every day, to watch charlotte navigate the same illness i always had is refreshing and i'm always touched by the level of care everybody brings to it. >> we have ten seconds left. you have this -- >> it shows i am allergic to peanuts and tree nuts, each on both sides. >> good to know. thank you both for being here and for the education you're doing. appreciate it. >> thank you for having us. >> we have to take another break. when we come back, we're going to learn about celiac disease, why we are seeing more gluten
these particular pretzels. this seriously is the biggest deal at camp. this morning we served 150 fresh donuts. >> this is celiac camp, a safe place for kids with celiac to have fun and not worry about food choices. >> i really like the food. >> the hot dogs were pretty good. >> definitely the corn dogs. >> these kids have a bad reaction to gluten, a protein found in certain grains such as wheat, rye, barley. >> celiac is an autoimmune disorder, it is a lifelong disorder, if you have celiac, you're on gluten free diet your life. >> here the food is gluten free, so they can eat whatever they want and they love it. >> what are the symptoms of celiac disease? >> it is different in every person, in some people they can
have problems with their joints, some people have problems with not growing, the most common ones are gi symptoms. >> stomachaches way more often than with any other kid. >> you don't absorb things well, iron levels may be down, you may be anemic, you may not absorb calcium, so bones can be thinner. >> for some, including marja and her family, getting that diagnosis took time. >> my daughter was born and she was very sick. she had never ending colic. diagnosed with appendicitis, diagnosed with every possible illness. one day i got so frustrated because i brought her to the hospital, they said she had leukemia, they wanted to admit her because the fever would not go down. but it has been 23 hours on the internet trying to figure out what was wrong with my daughter. the more i keep going through it, the name celiac keeps coming
up. i found out the doctor that put it in the books in 1999. so i drove 180 miles in my rv with my daughter, and i had a baby at the time, a little one, about three weeks old. i said i think my daughter has celiac but doctors don't believe me. she took one look at my daughter, she said oh, my god, postponed her meeting, took her straight to surgery. she came out of biopsy, said you were 100% right, she has celiac. she has damage to the small intestine, she had, sorry, it is kind of hard for me, had a tumor in the stomach created by celiac. she said if i had not done that, my daughter would not have lasted a month. then she told me let me have the baby. i am like why? because siblings will have it. if one has it, the other will have it. she took the baby in for surgery, she had the biopsy, she was 100 times worse than the first daughter.
she had a bleeding ulcer, she had so much damage to the small intestine, she wouldn't have lasted six months. after everything was done, they told me how to fix it. i went home, said i need to figure out what to eat. i looked at every label. everything had wheat. i sat on the floor, cried for two hours. i realize i only have corn shapes to feed her, that was the only thing gluten free. >> big learning curve for families. joining us, dr. amy berkhart. she's also a volunteer physician with celiac camp. we saw elaine taylor who taught me everything about this that i am trying to educate people. you have celiac disease as well. >> i do, yes. >> and it is in your family. >> i have eight family members that have celiac disease. >> i know there's so much i want to talk to you about. when did you know you had celiac disease? was that a journey also? >> it was a journey. i was very sick about ten years
and then one day got incredibly sick, thought i was having a stroke, then thought i was having -- that i had multiple sclerosis, and took about a year after that to figure out what was actually going on. >> and you were a doctor by then? >> i was already a doctor and dietician. >> it is not one of the things that comes up in medical school or is that getting better? >> i hope so. you know, when i went to medical school, we probably got five minutes on celiac disease. i am hoping they're giving a little more than that at this time. >> so how different is celiac disease from a gluten allergy or is it the same? >> there's three separate categories. celiac disease, which is an autoimmune genetic condition which is lifelong. there's something rather new on the horizon, nonceliac gluten sensitivity. basically you tested for celiac disease, they do not have the markers, but yet they still react to gluten and get sick.
we call it nonceliac gluten sensitivity. then there's wheat allergy, they talked more of immediate reaction where you ingest wheat and within minutes may get sick, have trouble breathing or vomiting. >> did you have the classic symptoms? >> there are no classic symptoms. the symptoms are so varied now. we used to think it was primarily gastrointestinal, and now we know the gastrointestinal symptoms are not more common, it is more common to have other symptoms like migraine headaches, joint pain, fatigue, skin rashes. the symptoms are so vast, that's why it is not well understood by a lot of people. as well as physicians. >> so you struggled to get a proper diagnosis, and marja struggled to get that. why is it so difficult? >> again, it is multi factorial. physicians trained prior to ten
years ago were taught it was a rare disease, 1 in 10,000. there was a study came out in 2003 that says incidence is 1 in 133. that's a huge jump in what the actual number of people with celiac disease is. >> so physicians that were trained were not looking for it. >> now people are looking for it, more aware of it. incidence of celiac is still on the rise. >> if you think you have it, you go to the doctor, the doctor says i am not testing for that, how do you make your case? >> what i recommend to patients, hopefully that's not happening much, but it does still happen occasionally, they go to a reputable website, university of chicago celiac center, or harvard celiac now website and print what the symptoms are and bring that to their physician and say look, this could be what i have, can you please test me. it is a very inexpensive screening test. hopefully people won't be running into that barrier too often. >> what are some of the challenges your daughter faces?
>> i think for children i think the biggest -- for most people with celiac or gluten sensitivity, socialization, going to birthday parties and not being able to eat the barbie cake, and going to restaurants and not being able to eat the same thing, not being able to buy lunch at school. it is very difficult in social situations for anyone, especially children. >> what is the easiest thing parents can do to get kids through this? >> i think to be organized, plan ahead, be a good communicator with your children's teachers, with their friends' parents, if they go to birthday parties, hopefully you can bring something similar. if you have a friend that's close, they often will try to accommodate your child. those are important. organization and communication are incredibly important when you have this. >> thank you so much. >> you're welcome. >> yet another teacher. i appreciate it. >> great, thanks for having me. >> we have to take another break. coming up, a stanford allergist
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welcome back. stanford allergy reports there are 2,000 hospitalizations every year. here in the studio is a doctor -- he is an allergist with stanford alliance for food allergy research. as i understand it, offers cutting edge food allergy research and services. you want to develop new therapies. can you talk about this? >> absolutely. the stanford alliance is alliance between the lab, clinical research and the community. so everyone is putting efforts together to move forward with food allergy research. eventually we'll understand it better and have treatment. the treatment we're studying now at stanford, oral immuno therapy. we're not the only ones interested in that new therapy. there are centers across america and the world looking at it. >> how does it work? >> to give a tiny amount of
food, tell the patient a speck of a speck. >> that you're allergic to? >> yes. >> it is scary, and there are reactions at first. always needs to be done in a hospital setting and it is research. the idea is when you increase doses progressively, you induce a state of desensitization. you won't reaction to the dose you are given. the hope is after many years, your body will understand you're not allergic, for example, peanuts, and you will go off therapy and not react any more. >> have you had any success? >> we're at the stage showing it can be safely done. we're able to desen sitize. you can't do it alone, this is research, it is experimental, and there are reactions. every time we increase the dose, has to be in the hospital in
research setting to treat people. sometimes we have to give epinephrine when we increase doses bought they start to react. >> they sign off on this? >> they do. some people ask why are you doing research on food allergy, don't you want to take care of people that are sick? i tell them food allergy is serious disease. you have a dangling sword over your head, has a huge impact, talked about that in the first segment of the show, has a huge impact on your life. >> it is not approved by the fda, still experimental, you're doing clinical trials? >> exactly. we're wrapping up phase one trials to show it can be done safely. the next test will be phase two and three trials, we will enroll more patients to prove it is effective or not in inducing permanent tolerance, meaning you will eventually be able to go off that and not react. >> if people are watching, there's a website to show them
they can sign up. >> food allergies.stanford.edu, tells you about the trials. if you're interested, write us and we can screen you and see if you would be eligible to participate. >> one of the questions dr. brooklyn were talking about, seeing more and more food allergies. are you seeing that in your research? >> that's absolutely true. 30 years ago, weren't even talking about food allergies. last ten years, three fold increase in peanut allergy prevalence in the united states. >> why? >> we're not sure exactly. i think it is safe to say if it was just one thing, we would have figured it out, probably multiple changes in the environment. so not a genetic issue, genes haven't changed in the last thousand years, something has changed. one thing that has changed, our environment is cleaner, kids don't get as many infections because they're vaccinated. smaller families, those factors
educate the immune system when younger. that's a hypothesis. >> do we process food differently? >> people ask why is there more peanut allergy in united states than asia, they use lots of peanuts in the food. there's a difference in the way we treat the peanut. there they boil it, here we roast it. when you roast that, you induce a change, makes it look more dangerous to the body. and that will make it look like an allergen rather than a safe food. >> i want to thank you for the incredible information. we will post it on the website. thank you very much. i'll call you dr. phil from now on. >> of course. >> unfortunately that's all the time we have. thanks to all of our wonderful guests. more information about today's program, go to our website. we are also on facebook. you can follow me on twitter.
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coming up today on "intelligence for your life," 86% of pregnant women now say they do not get offered a seat on public transportation. when researchers dug into this, they found it's because of the obesity epidemic. we can't tell who is really pregnant. don't miss this story. also today, is it a date? how do you tell? we have the answers from dating experts. if the man insoins pay iists ons it a date. and a fun conversation starter. a list of five sounds kids have never heard. remember the dialing rotary phone? what about the ding as you enter the gas station? you'll love this. all coming up today on "intelligence for your life."